RE Breakfast 
Tuesday, June 20, 2006, 05:38 AM
Ok I donít know if itís because I have spent so much time on my blog and reading up various things about hearing and CI's BUT - Making breakfast today I realised I could hear it as I buttered my toast a lovely crunch scrape sound. I HEARD the water as I poured it into my coffee cup.

Sitting here now making the keys all buttery because I am still eating my toast, I can hear it as I bite in to it. Itís a lovely sound.

I reason I have not noticed before is I donít eat breakfast much normally, but today I felt like it. I wonder what other foods sound nice?

I remember my disappointment when we brought a packet of that sweet which is meant to pop and crackle and turn into gum. James said he could hear it - but I could not hear it at all. Wonder if I would be able to now?

When it was first switched on I noticed every knife scrape across the plate, and every clatter of the fork hitting the plate and every ting of a glass being put down on the table. Someone scraping their chair back was enough to make me look like Roger Rabbit when he hears *whispers* that song.

Itís not as bad as that now but when I go to a restaurant, I can still hear a lot of sounds that I never did before. The only difference is, peoples voices carry over the top, I can hear the sound of someone laughing, or a group deep in conversation. I might not be able to understand what is being said but I can hear the tone which their mood is set in.

Some days you go through life not realising how much you can hear now, its only when you reflect that just how clever it is becomes apparent.

Michael is right this article is good, it had me laughing out loud.

http://www.washingtonpost.com/wp-dyn/co ... 01933.html

Does he have radar for this kinda thing? Every single thing he has recommended has been able someone with a fabulous sense of humour.

Not that I am complaining mind you

Josh Swiller had a lot of speech therapy. I can relate to this, I also can relate to the fact that he loved listening to music and would follow the song by obtaining the lyrics. I used to do that for years till I suddenly stopped being able to hear a single thing on the TV, record player etc.

I also love the fact that Joe could follow lyrics if he had them written down except for the likes of mumbling Bob Dylan, who, according to his speech therapist, really should be ashamed of himself! Classic.


I too found friendly women who spoke through their smiles hard to lip-read. With one particular colleague I can remember thinking if only I could hit her, it would be worth it just to take the smile of her face SO I can lip-read her. It was always such a drain on my eyes.

Sunglasses also stopped me from lip-reading easily - I like to see people's eyes and I like to be able to see their full profile. Somehow sunglasses cut the profile in half and I just donít seem to lip-read as well.

Joe said he had 70% hearing when lipreading and hearing aids and when asked:

What's 70 percent like? It's hard work. It's always hearing the laughter but rarely catching the joke.
Ok I have lived in this guys shoes.

One-on-one you can hear pretty well, but big gatherings -- are just noise falling on top of noise,
Joe said [if we could hear it would be] like ocean waves in a storm. I think it is more akin to being shoved into a washing machine, which has been loaded with plates by mistake, and still being expected to have a conversation were you donít say "I'm sorry could you repeat that again please?"

It is so fascinating to see that similar techniques are developed to get by and pretend you can hear, ie
the smile-and-nod, the thoughtful lip purse,
and the yes-and-nod - which can go wrong if its more appropriate that you had said no. But why do we put ourselves through it? Simple reason I guess, we want to be a part of it all and to do that we have to somehow stay in the game. It too time consuming to ask people to keep repeating things, so we bluff our way through and cross our fingers and hope it works out.

My mother used to say to me ďWill you STOP nodding your head and smiling when you CLEARLY have not understood a word I said. One of these days a seriously dodgy guy is going to say to you ďwant to come back to my placeĒ and you will wonder why things went so wrong.Ē My mother always had a really bleak view on the world but I did admit that she had a point. It took me years to break the habit and stop nodding or saying yes in said of pardon? I did initially try the trick of shaking my head and saying No, but I missed out on so much I stopped doing it!


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RE Made another phone call today 
Tuesday, June 20, 2006, 04:48 AM
My email about my split coil has not been answered, as I do not have another email to try. I thought I would give the implant centre a ring.

I found out that Deborah is on holiday - the nice admin lady said she would send me a spare. I asked if I should send it back the broken one and she replied "yes please." I said ok and thanks very much for your help and she said "ok then bye for now"

I did have to turn up the volume on the phone but other than that it was fine!

*jumping for joy* on typetalk it would have took me about 15-20 mins. On the phone it took me less than 4.

What a time saver this is going to be!

These are from Michaelís article





I thought these were amazing. (ta Michael!) I have already asked for a copy of my own x-rays. In mine I could see the implant coil round my own cochlear and both James and I stood there looking at it for what seemed forever. It was so small, so neat, so perfect. It seemed incredible that it would be the very thing that would enable me to hear!

Michael wanted to hear opera with his implant - like he could before he became deaf. He says:

Bol starts simply enough, a single flute accompanied by a snare drum: da-da-da-dum, da-da-da-dum, dum-dum, da-da-da-dum. The same musical clause repeats 17 more times, each cycle adding instruments, growing louder and more insistent, until the entire orchestra roars in an overpowering finale of rhythm and sound.


I really need someone to sit with me and stop the tape/ record and say now that was a flute, press play, stop! Now that was a snare drum, press play and so on. Maybe I need to find a music tutor who is willing to spend a few hours with me going through all the instruments? That could work.......

Michael used the quote from Helen Keller to give an idea to how terrible deafness can be:

http://www.wired.com/wired/archive/13.11/bolero.html#

Micheal used the qoute from Helen Keller to give an idea to how terrible deafness can be:

Helen Keller famously said that if she had to choose between being deaf and being blind, she'd be blind, because while blindness cut her off from things, deafness cut her off from people


I read her book when I was 13 and it scared the sh*t out of me. The thought of being deaf AND blind was enough to make me very afraid. so much so that one day when I was trying to save the cat (stupid cat) as she had got her jaw caught under her collar, in her panic she clawed my face and got close to my eyes. I went into complete hysterics and could not calm down until my mother shock some sense into me.

Hearing people always seem to fear losing their hearing, whereas for me it was always my eyes. When you have lost both - youíre entitled to choose!

One of the things that a lot of people have said to me over the years is "*gasp* oh I would kill my self if I could not hear my music." Jeeze thanks - so not only am I deaf - you donít think my life is worth living - great. Then they would say "oh no, no, I could not be as strong as you." Yeah right, letís hope you donít lose your hearing when youíre older eh. No no they would say - I just couldnít be as brave as you. There is nothing brave about going deaf, brave is those who put their live in danger in the line of duty, brave is those who sign up to join the arm forces or the Navy like my brother.

Robin has passed his drill by the way - WAY TO GO ROB, we are so proud of you!

Gosh I sound a right bitter old thing - but I am not really.

"The goal is to have the patient live a normal life, not to be deprived of anything."
that sounds good. Someone tell the NHS please? I need two in order to have a normal life and not be so very deprived.

121 virtual channels and he can hear his music again. Just reading his account brought a lump to my throat and tears to my eyes and I have never heard the music myself.

While my friends' ears will inevitably decline with age, mine will only get better.


I guess my ears will always be young!

I always used to think that at least being deaf meant that in my old age I would be a fluent lip reader. But then thats not much good when your peers are struggling to learn.... humph!


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Re Waiting for the postman 
Tuesday, June 20, 2006, 04:20 AM
I had to get up today to wait for the postman. He is bringing a large parcel that requires me to answer the door. Now back in the day, I would have sat in the front room and from time to time looked out the window - anxious that I had missed him.

These days I can be anywhere in the house and I will hear the knock or door bell go. It has made my life stress free in so many small and big areas that I feel more relaxed and much more confident as time goes on.

I am just waiting for the day that some bright spark invents a total water proof implant that I can wear in the shower. I had to get up at crack of dawn in order to be able to shower and dress before the postman gets here.

A processor that could be somehow attached to the head without the need to be looped round the ear - that stays on while I sleep and does not move would be nice too. I could throw awake the shake away alarm clock that scares me to death every morning and almost gives me a heart attack when it goes off. We could get rid of the blue flashing alarm that likes to play tricks like going off unexpectedly with it gets dusty.

Then my life would be 100% perfect. But I will settle for 98% for now.

Ah! the postman has just been. The door bell as a two tone ding ding. It still does not sound as sharp as I would like, but the more I hear it the more clear it will sound. (no please don't all come round ringing my door bell!)

I had to text James to let him know because he is so excited by the fact that his new keyboard is arriving today *bless* its the type were the keys light up in blue. As I am sending the text from my office where it is fairly quite - I noticed I could hear the tiny beep beep beep as I selected a letter on my phone. I did not even know it made a sound! It also goes blurp when its send a text. How cute - a burpy mobile.

Damn that Michael Chorost!

It looks like I am going to have to buy the book called sperm are from men, eggs are from women - the real reason men and women are different by Joe Quirk.

I have really enjoyed reading Michaelís blog - chapter one of the books was really interesting, from a point of view of becoming deaf so suddenly.

I have always regarded myself as lucky, even though it was painful to lose my hearing so slowly - it gave me plenty of opportunity to learn new ways of coping, new lip-reading skills ie the best way to lip-read a guy with a beard is to ask him to always keep it trimmed above the lip line. You try it - its amazing how just being able to see the lip line can make it easier to lip-read an otherwise very difficult person (men!)

I have always believed that the way I think and see the world is different to the way hearing people think and see the world.

I am sure being deaf has altered my perception of things in some way.

I can play back to myself the lip pattern of what a person has just said, if I do not get it the first time.

I can see the pattern in my mind like a recording - I canít do this with the sound I get from my processor. Even though I have tried to, what I donít get is the part of the sound I have missed.

Thus I have to hear ALL of the sound, to understand each word or I am lost.

There has been lots of comparison to what having an implant is like to being hearing.

I guess when you have lost something it will never be as good as the real thing. Michael compares this to "repairing a spider's web with a ball of string"

Someone else compares to ďlike being given the choice of only seeing in blue or only seeing in grey, itís not the same as being able to see perfect, but IT is a choice.Ē

I have never been hearing so I cannot compare the experience of being able to hear with an implant, to being able to hear perfectly well.

For me the experience is like stepping off one world were I never knew where I stood and was full of loud sounds which merged into one single sound which was like a loud train with a deep throb, and a crackle of static, combined with ringing of of bells, and pops and squeals that I was never sure were real or not.

Into a world were the ground is firm, and each sound is crystal clear and holds its own, neither dominating another sound or being dominated. Where the only thing you hear is when there is something to be head.

When a person speaks, you hear the richness in their voice, their accent, you can even hear the excitement, or sadness, or the hope.

After years of trying to read how someone felt by looking into their eyes, it never ceases to amaze me how expressive a voice can be.

I understand now how someone can captivate a whole nation just by speaking; I understand now how Martin Luther King made himself heard when it was a time where people did not want to hear.

I have never underestimated the power of speech, as I had to work very hard to be able to speak as well as I do. What I did underestimate was the power that speech can have over the written word.

When I have my processor on, I can sit in my office and ďallĒ I can hear is the gentle hum of my computer, the occasional kid outside screaming to their friends, the odd car alarm, the tapping of my keyboard keys. The post drop through our letter box with a soft ďplopĒ.

If I sit quietly, I can even hear the sound of my breathing (which took a little getting used to.)

This might not sound much to others but to me itís a big deal because these are sounds that I have never heard before. I still get excited over opening a bottle of coke just to hear the frizz and I donít drink the stuff!



[ add comment ]
RE Things 
Monday, June 19, 2006, 12:24 PM
Today as I was leaving the house I set the house alarm. I noticed at this point that the beeps which I have been able to hear for some time now sound much more crisp and sharp. They are very easy to hear these days.

I remember the days when I used to turn the house alarm on or off and as soon as the beeping started my tinnitus would kick in and I would not be able to tell if the alarm was beeping or not as it all sounded the same. The same problem applied when I set the alarm off by mistake - my tinnitus would kick in and I would be unsure if I had set it off or not!

Itís much easier to hear the check out girls these days. I used to have a trick where I would say no, no, thanks. Which if the check out girl asked do you have an ASDA card, do you want cash back? Then we would both be fine. If she said have you had a nice day, have you got an ASDA card, and then we would both be confused, especially if she said why not? Because then I would not have a clue what she was on about since I never heard her in the first place.

I even have little chats with the check out girl these days, we both agreed that the baby that looked at us as he was pushed by his mum was cute and we both like cooking. Normally I would try and get out of there with as little chat as possible.

Since I have been reading on Michael Chorony's experience it has made me think more about my own.

The one thing that I never understood was how professionals seemed to lack understanding about lip-reading. I have even looked for papers or studies about it - but I have never found any.

For example has any one ever noticed that there is a method to lip-reading.

ie

Lip shape comes in mainly five shapes

Thick lips
Thin lips
Symmetrical lips
Top thin lip, thick bottom lip
Thick top lip thin, bottom thick

The only thing that might change this is an injury or deformity to the lip but the above will still apply.

Then there is accent

English
French
Italian
American etc

Which all are the same from person to person and the only thing that changes is dialect

Ie Scots from Edinburgh do not sound like Scots from Glasgow

BUT they still sound Scottish, and this reflects in their lip patten

English people from London do not sound like English people from Manchester or Newcastle or Liverpool.

BUT they still sound English.

Dialect probably is the more complicated thing as it can change a pattern of speech from place to place. Where as accents are more predictable and tend to be easier to lip-read.

The only thing that can make things more complicated is when say a French person learns English with a Manchester accent and retains their own French dialect. Then it gets difficult.

Now the thing that I realised by the time I was 16 was everyone owns their own blue print lip-pattern which is on top of everything else I have just explained.

This comes from the type of family they come from, the way their mum and dad and other relatives speak and their DNA. It remains the same for their whole life and does not change with the acceptation of a stroke perhaps.

I found that once I understood the pattern of their blue print, and I had got used to their accent and dialect. That I would not have difficulties lip-reading them again. I could store their blue print to memory and it would come back to me if there was a long distance between the last time we met.

What makes lip-reading so excusing is understanding the blue print for every new person I meet and storing it to memory. Accents are easy to remember, as itís like seeing apples and thinking oh they are apples.

Blue prints are different they are totally unique to each person.

Enough about lip-reading any how.

Today something terrible happened. My processor coil split!

I try very hard to take care of it Ė but the bugger seems to twist and curl up no matter how careful I am.

I always brush my hair before I put it on; I always hold the processor rather than the coil. But still the coil splitsÖ.

Surly they can make them a little hardier than this? No wonder NHS refuse to justify the cost of a second one. The parts keep breaking!

In the year that I have had the processor (and thatís not till the 30th of July Ė which is still eleven days away) I have had two split coils and three cracked cases.

My heart goes out to all those peeps that have to pay for the parts of their processor. For the cost of staying hearing must be very high.

This is the cost of a cochlear if you wanted to go private with the Manchester Programme.

Pre-implant assessments - per session

Initial audiological assessment -£250.00

Information and expectations counselling -£150.00

Further consultations - £150.00

Magnetic resonance imaging (if required) - £780.00

CT scan with contrast -£720.00

Surgical cost of implantation

Implant device -£15250.00
(VAT exempt if bought direct from manufacturer)
Surgeonís fees - £2500.00
Anaesthetistís fees - £1500.00

Hospital accommodation, operating theatre charges,
Pathology tests and Radiology charges - £4000.00

Post-implantation

1 years post implantation rehabilitation and audiology - £11000.00

Annual maintenance (charged per visit) - £250.00

Spares and repairs - Charged as required

It was enough to make my eyes water! I could not believe that the implant and processor on its own costs £15250.00. I dread to think how much all these split coils and creaked cases are costing the NHS.

I remember the first time I went to the hearing repair clinic to get batteries for the processor. I was armed with a letter from the Manchester Implant centre which explained that I needed batteries every other day and should be given a box of 100.

I can remember feeling as if I had to prove I was not trying to rob the clinic unnecessarily of their batteries and I did have a good reason for wanting a 100.

I asked for batteries for my hearing aid as well and they gave me one pack which had six batteries in it. I asked how long they expected this one pack to last me? They also gave me one tube for the ear mould and told me if I wanted more I had to go back to the clinic. (These tubes need changing every 2-3 months!) The parking costs £2.70 for one poxy tube!) I explained all this to the admin, who crossed her arms over her amble bosom and stuck her lip out in a determined way, she raised her eyes to her colleague if to say ďhere we go we have a right one hereĒ and I knew the battle was lost. As much as I am grateful to the NHS, some of the people that work within it do not have a #*&%$£*$£@ clue.

But I hate being negative so to end on a positive note, a car alarm went off just now and I knew it was out side but not what it was. I could hear it quite clearly. Once I looked out and realised it was a car alarm it started to sound like one too. So I have learnt and identified a new sound! How exciting is that!!!! *grin*


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RE The Rebuilt Webpage by Michael Chorost 
Monday, June 19, 2006, 07:27 AM
A friend gave me the link to Michael Chorost Web Page

www.michaelchorost.com.

I was moved to tears (seems to happen to me a lot these days I must be getting soft in my old age) by the quote:

My misfortune is doubly painful to me because I am bound to be misunderstood; for me there can be no relaxation with my fellow men, no refined conversations, no mutual exchange of ideas.

From Beethoven's will.

I remember watching a film of Beethoven's life and how much I empathised and pained for his lost of hearing. How difficult it must have been and how wonderful he would have found todayís technology I am confident that he would have done everything in his power to experiment with different music to discover what works best with implants. We would have had a very different Beethoven I am sure.

There is also a link with a download of the first chapter of Michael Chorost book which is as good as Amazon promised it to be.

http://www.michaelchorost.com/docs/Chor ... bution.pdf

I canít wait to receive it now! The thing with him is he is refreshingly honest, clear, very matter of fact and down to earth. Even down to the point where he is over joked with his first negative review. Bless.

I have read his first chapter and also the negative review because I was curious to why he liked it so much. I understand now that his experience of going deaf has been very different from mine. He was hearing impaired (his own words) which means from my point of view he belonged very much in the hearing world - he could use the phone with ease. The fact that he suddenly became profoundly deaf in a very short space of time must have been terrifying and thus affected the way he views himself. He lost his identity and became cyborg.

I never lost my identify, being deaf has always been what I am and will always be an important part of me. It made me work harder, strive further and achieve more than deep down I thought might be possible. In it all I did achieve everything I set out to, I just wish I had believed in my self a bit more.

So for me having an implant did not make me less human, it did not make me less me. I am still ZoŽ and I always will be. What it did do is enrich my life beyond my wildest dreams. It gave me a taste of what life can be like, and it has been a wonderful roller coaster ride that I would not have missed for a million years.

I donít take my life for granted - I canít afford to. after all with the implant and my pacemaker - I am battery powered.

What is interesting to see, is how Michael has developed since he wrote the book. Reading from his webpage he says that Rubin made one reasonable criticism in that he did spend too much time on the idea of the cyborg. Michael said he now realised that this is based on a dated science-fiction fantasy of spiritual abnegation.

To quote Michael:-

It simply makes no sense to label a person a ďcyborg.Ē Itís like labelling someone a ďFiatĒ because of the car they drive.


I also agree with his sentiments that it is not what the implant can do to you that counts; itís what you do with it.
x


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RE Rebuilt By Michael Chorost 
Sunday, June 18, 2006, 03:49 PM
I have found a book called Rebuilt by Michael Chorost who wrote a scientific memoir of going deaf and getting his hearing back with a cochlear implant which he calls a computer embedded in his skull.

He goes on to say that Science fiction writers and filmmakers have speculated about cyborgs for decades, and in his book he attempts to reveal what itís really like to have part of oneís body controlled by a computer.

Sounds interesting. I am not sure if I feel that my cochlear implant controls my body in the same way as my pacemaker controls my body.

Hmmm... My pacemaker keeps my heart beating, which in turn keeps the blood going round and keeps me alive.

My cochlear sends signals to my brain so that I can hear better - is that control over me? Or control over my own damaged cochlear, or control over my brain, thus me?

Guess I am going to have to wait for the book to come from Amazon!


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Re Beeping in the kitchen 
Saturday, June 17, 2006, 10:22 AM
Today while I was cooking I heard very clearly some beeps in the kitching but it stopped before I could figure out what it was.

My partner came in and I said did you hear that? Nope...

I had a little think about it and walked toward the grill and noticed that it was flashing it was ready. I then figured out that it beeps after five mins of warming up!

My! How the hearing live! Such easy lives they lead. Lucky souls.

I count my blessings too for I feel very lucky each passing day.

I notice more and more sounds, which seem to always sound clearer today, than they did the day before.

Doughlas from the Yahoo forum had his operation yesterday and he went home today. I have seen his photos which look good, although he does have some serious brusing there! I guess it is all down to the surgon to decide how big the scar will be.

ALL THE BEST TO YOU DOUGLAS MAY YOU HAVE A SPEEDY RECOVRY.

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Re it sounds odd but 
Wednesday, June 14, 2006, 05:59 AM
I know it sounds odd, but I am sure I can hear better with the un-implanted side now!

Itís almost as if the implant as switched something on in my brain and made it realise "hey there is sound coming through here look!" "what does it say?" "OOh can we work it out?" "Lets give it a try"

Without the processor I can hear much better on the hearing aid than I ever used to. I can actually work out what people are saying without lip-reading although only one word out of say 5 I get. The thing is I got nothing before so thatís a big change for me.

Also I have noticed with no hearing aid or processor I am still hearing things! I can hear myself climb the stairs. I never noticed it before I thought I could hear nothing. I threw a box in the kitchen just now and I was stunned to hear it go bang on the floor. I think I got so use to not being able to hear things that I did not bother listening for them any more.

It really is true that you have to re-programme your brain, re-educate it and re-train it to listen. Itís almost like coming out from a long sleep!

I decided I would call some companies today to arrange for a quote for cutting down our trees which are now house high. The first call went well and I got his name and time that he would come round tomorrow. The second was an answer machine and I could not understand it.

The rest rang and rang and the last one answered and again it went well and I got his name and time. I checked back the name and time and heard him say yes.

It was quite scary and I did not tell them I was deaf, I did not have any really problems but I did have to concentrate hard.

Maybe it will get easier the more I practice.



[ 1 comment ] ( 12 views )
RE HAPPY BIRTHDAY! 
Tuesday, June 13, 2006, 01:25 PM
Happy Birthday to you!
Happy Birthday to you!
Happy Birthday Dear Cochlear,
Happy Birthday to you!



Thank You Cochlear, and the Manchester implant centre for everything you have given me!

So my cochlear is one year old today, and what a journey it has been. I have seemed to have celebrated this birthday by designing the logo for ReSound and the Cicada Club both which support people who have had Cochlear implants.

Tonight I am going to cook a celebration meal and eat a slice of carrot cake to wish my Cochlear many more years to come. On switch on day which was the 30th June we will go out for a celebration meal as that was a life changing day.



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RE A Visit to the Pet shop 
Monday, June 12, 2006, 10:40 AM
Today I went into town and I heard the church bells ringing. As I have never heard them before I did not know how to count the rings. Does ding dong count as one ring or two!?! Still that a side they sounded lovely, and I can certainly understand the appeal for church weddings if there are bells ringing out now.

I also went into the pet shop for a look around as I really want a puppy! They did not have any puppies but they had two lovely tortoises which I fell in love with. I had a lovely chat with a lady who already had a tortoise she was telling me that she does not use the expensive vivarium that they like you to buy these days as hers sleeps under the cupboard where the draw has been taken out! To be honest my Nan had a tortoise and it was fine in the summer, but in the winter it went in a box in the shed.

They also had a blue and gold Macaw which was the size of a two year old child. I said hello to him and he looked at me with interest. I was just reading what it said on his cage and he coughed at me and then barked loudly like a dog! I looked up and said "oooh aggressive!" and he replied "yes!" So I said well you did not say hello! and he said Hello!, so I said "ah being nice now then?" and he said "ahh, yes, Hello!" I could hear him very well and he had a lovely voice. I was close to tears when I walked out the shop coz I have never heard a parrot before, especially not one bark and cough at me to get my attention.


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